Remember Last Month?

Today was going along just fine, although Peyton was pretty irritable and her heart rate was a bit higher.  The doctors made their rounds and we were sharing all our concerns about her.  They left the room.  The nurse came along.  He was in the doorway at the cart {they have carts in the hall with their computers and some meds/supplies are also locked in there}.  I lifted Peyton up into a sitting position so I could make adjustments so she'd be more comfortable.  Almost immediately she kind of threw her head back and was staring off into nowhere.  Then things seemed all to familiar.  Remember when she stopped breathing last month for about a minute??  It was happening AGAIN.  I called to the nurse who called down to the doctor who was still in the hall but up a bit.  Everyone came in.  They didn't call a MET but someone asked if they should.  The episode lasted about 30 seconds this time.  I was able to grab for the suction while the nurse got her oxygen going.  The doctor was just seconds behind coming into the room, but she was pretty well through it when she came in.  Her heart rate was elevated, although it has been all day.

More discussions ensued about what's going on with Peyton.  They still don't know.  More discussions ensued about what to do with Peyton.  She had been taken off one of four antibiotics that she's on, but they began discussing putting her back on that.  They were going to stop a second one, and the orders to discontinue had actually been put in.  They cancelled those orders and have continued.  She's on 3 antibiotics that I know of for sure.  Not sure about the one that was d/c'd if that will come back or not.

I described what happened to the doctor and stated it was exactly like the episode last month, only not as long.  It is possible, as I thought last month, that it could be seizure-related.  They are going to talk to neurology and get their take on it.  She may need an EEG.

The pulmonary doctor was consulted after this and this was him finding out that she was even in the hospital.  He was not impressed.  I don't blame him.  Actually, as far as I was concerned, he had been contacted because I heard someone say that they were going to - either in the ER on Tuesday or in her room Tuesday night or Wednesday morning before she had the episode that sent her to the PICU.  Anyway, he's on the case now and his suggestion was for her to wear her bipap 24 hours a day to help keep her airway open in the event this happens again.

Because of what happened, it was decided that Peyton would be moved to the PICU stepdown unit.  So we are not where she was on Wednesday {thank God}, but she is being more closely observed here.  Not that she wasn't before...but there's more constant monitoring in the stepdown unit.  She's on the full monitor rather than just the pulse ox monitor which only measures oxygen and heart rate.

Nothing had been mentioned yet about going home, but now that we're over here, it's definitely going to mean a longer stay.  I don't know what is going on with Peyton, but I believe there are multiple issues.  If anyone from the show "Mystery Diagnosis" wants to weigh in, I'd be more than happy for them to!!

As always, prayers are appreciated!  Please keep Moira in your prayers too.  This stay is really weighing on her.  She was unable to go somewhere today because of Peyton being in the hospital so she was upset about that.  She's worried about Peyton.  Seeing Peyton in the PICU, even if only briefly, was scary for her.  It was scary for us!!  

I'll keep you posted!

Back In A Room

I apologize for not updating yesterday.  Wednesday was pretty scary to say the least.  It was also extremely exhausting.  Peyton was in the PICU for under 24 hours, but it was highly stressful, exhausting, etc.  While I could use my laptop at her bedside, I was honestly too wiped out to do much of anything.

Peyton was released from the PICU early afternoon yesterday, at which point she was put into a regular room, just down from the one she started out in on Tuesday night.  She had no major crises while in the PICU (Thank God!).  While in the PICU she had to have her shunt tapped (think spinal tap but on her shunt in her head).  You can click through this article to read up on what that's all about and you can see pictures as well: http://emedicine.medscape.com/article/81058-overview.

The doctors were just by a few moments ago.  So many tests have been run on Peyton and, believe it or not, we still have no answers.  They have NO idea what is going on.  The odd bruising that happened right before going to the PICU may be a reaction to one of the four antibiotics she has been on (it's a new one to her).  We're not 100% sure about that, but it's a possibility.  There are several things going on and there's no answer for anything.

Would I like an answer? YES - but so would the doctors.  They're just as anxious to know as I am.  They are sorry we're here and that we've gone through so much.  I am very appreciative of all they are doing and I get that they don't have any real answers but I also get that they're doing all they can to figure it out.

Peyton is doing SO much better than Wednesday.  SO much better.  The difference is immediately obvious to anyone who saw her then and sees her now.  We're not back at 100% yet, but we're getting there.  She's off 1 of the 4 antibiotics and may come of another since it appears it may be the source of the latest weird bruising that's happening.

No indication has been given as to when we'll get home, but it won't be in the next couple days.

We appreciate and thank you for your prayers!

A Scary, Eventful Day

Yes, it has been quite the eventful day - and not in a good way.  I will start by saying that we still have no answers as to what is going on.

This morning it was just more of what I described yesterday.  Within a couple hours, she was having problems holding her oxygen level and needed oxygen.  It was still a little low and her heart rate was also high.  No fever to start the day.  Within a few hours, she began developing weird bruises just out of nowhere.  All the while, she was extremely lethargic.

I called for the nurse.  It wasn't her own who came in, but that nurse got Peyton's nurse.  She called the doctor.  The doctor came and he left and came back.  Then they did a MET call (think emergency response type of call minus crash carts and other scary things).  Soon we had 15-20 nurses, doctors, respiratory therapists descend onto her room and at any point in time there were 4-6 people immediately at her bedside.  Respiratory began doing treatments.  They had an ambu-bag ready.  She wasn't ventilating well.  Her coloring was poor.  Her respiratory status was vastly different from where it was not long before.

It wasn't scary in the "she stopped breathing" sense that we had a few weeks back.  But it was pretty darned scary having that many people come in all at once and take over the room.  I was standing towards the back and there was a nurse in the room who had just come in to talk with me (she handles pain management and palliative stuff). She just happened to be in the room when it all happened, so she was an incredible support during everything.  One doctor came in and asked questions that I couldn't even answer because I was too emotional.  She answered for me.  

Long story short, after a debate between sending her to the PICU vs the PICU step down unit, the PICU won out and we were sent there.  It's an open unit with curtains between beds.  It's loud.  Lots of activity.  Lots of beeping equipment.  Alarms going off.  Just busy.  Chairs but nowhere to sleep in here.  No food or drinks allowed.

Prior to the events I described, she had been sent for a stat shunt series.  She has a shunt because of hydrocephalus.  There was some concern over everything being shunt related.  The series is basically a set of regular xrays to look at the shunt and it's tubing that goes into her abdomen.  It was shortly after returning to the room that everything happened.

A stat head CT was also ordered.  She had that a while after being brought up to the PICU.  It was well-timed as Ron and Moira had arrived and he had food for me.  I wasn't allowed to go for the CT so I sat with them and waited.  Everything looked ok on all that imaging, but they ordered for her shunt to be tapped.  I guess you could say it' like a spinal tap but they tap into her shunt in her head.  They are able to check flow and pressure when they do this, so all that looked good.  They took samples of fluid.  So far the numbers are all looking good with nothing pointing towards a bacterial meningitis.  

That said...we still don't have a clue what's going on.  Everything keeps coming back negative.

Please keep Peyton in your prayers.  Today was pretty scary.

Our Home Away From Home

Can you guess by the title where we are??

If you guessed back in the hospital, you'd be right!

Since Peyton came home about a month ago, she's been doing better on her new pain meds.  That said, in the past couple weeks, she has been incredibly irritable.  Sometimes inconsolable.  It has had me to the point of crying along with her because I have no clue whatsoever as to how to help her.  Something is wrong and I can't fix it.  For that matter, neither can anyone else.  It absolutely breaks my heart to be in that position.

In addition to this, her home nurse and I had been noticing some symptoms which were unusual.  She has been waking up with puffiness on her face, mostly around the eye.  Fluid seems to be pooling on the side of her face that is "down" (she turns her head to the side when she sleeps).  It takes hours to resolve most of the time.  That's not normal.  Then the other day when she woke up, she had bright red streaks across the top of one hand and a few big blisters.  Not sure how/where those came from, but yesterday a brand new blister popped up on her pinky on the same hand.  One of the original blisters has gone down, but the red streaks are still there.  Then there are other issues, such as her oxygen percentage which is not always staying up where it should be.

Peyton's home nurse wrote up and nice synopsis of what has been going on.  She was concerned about it being a cardiac issue, so I emailed that to Peyton's cardiologist.  I also sent it a couple other places in case anyone else had any ideas.  The cardiologist actually called me yesterday morning.  Based on Peyton's latest echocardiogram done last month, he was not too concerned that it was a cardiac issue.  Not that it couldn't be, but he said based on the echo and what's going on, a cardiac issue wouldn't be in his top 3.  That said, he wasn't sure what could be going on.  He (as well as one other provider) suggested taking her to the pediatrician so they could at least order some labs to check basic levels on various things.

Since I had sent that email to the pediatrician's office, I just called them after I got off the phone with the cardiologist to see if Peyton could get in.  She has been having a particularly rough past couple days.  They were able to get her in right away, so as soon as I got off the phone, I busied myself getting her ready to go.  Our pediatric group has 2 offices - one close to home and one not so close.  They rotate the doctors through the one that is close to home as the other is their "main" office.  Our doctor was not at the close location, but in the interest of Peyton's condition, I took her to the close location.  We hadn't seen this particular doctor before, but she was very nice.  After examining Peyton and agreeing that she didn't look particularly well and that these issues were concerning, she thought we would be better served by going to the ER.  So she called the ER to advise that we were on our way.  We went home, grabbed some stuff (including the home nurse who, by this point, was arriving at home for her shift) and headed out.  Side note - the home nurse is able to accompany Peyton to the ER, but she has to clock out at the point at which they admit her to the hospital.  Up until then, she can be on the clock because it's just like going to a doctor appointment.

So we came to the ER where the waiting room was strangely busy.  It took a little time to get back to a room, but not horribly so.  They were ready and waiting for her when we got taken back.  We saw the doctor pretty quickly.  Labs were drawn.  She had a chest xray.  Then we waited.  And waited.  They were consulting with cardiology who essentially told them the same thing her doctor had told me on the phone this morning.  Then we were waiting on a neurology consult.  We waited.  And waited.  And waited.  Eventually we were there about 8 hours and we finally saw neurology.  Not her own doctor, but one of the residents.  He was very nice.  But when he recapped what he had been told, it turned out that one of the minor issues had been translated to him as THE issue for us being there.  You see, she's been pretty lethargic the past couple days - because she's not feeling well because of whatever's going on.  But that was translated to him as increased tiredness for days and change in mental status.  Both of which are true, to an extent, but the translation was far more serious than the actual situation. When we described what was going on, he basically said it sounds like she's definitely sick, but it's not a neurological problem.  May I take this time to point out we waited for 8 hours for this???  He did talk to the attending because it was his feeling like she should be admitted to have a general peds workup done.  

Yesterday was perhaps one of the most frustrating ER experiences ever. I don't know how many times we had to redescribe what was going on.  I understand that you have to do that.  Trust me...I've been through the ER enough times to know how it works.  But it's the retranslating the story when they a) aren't relating all the facts back to me...missing some of the key issues, and b) they main issues to us aren't the main issues to them (read: they are missing the point).  Then in the evening, the nurse, sweet as she was, asked us if Peyton was missing any meds for the day.  Um.  We've been in the ER for 9 hours now and your asking if she's missing anything??  Most definitely yes.  They had her 7 page list of home medications, as the ER always needs to have an updated list of current medications.  When she came back she said she had orders for 3 meds.  3.  THREE.  Peyton's evening meds consist of about TWELVE meds, not to mention she'd missed two during the afternoon that are only once a day.  Her pain meds and seizure meds were NOT among the 3 either.  After all that had transpired at this point in time, I was beyond frustrated.  Even when they have all her meds, the dosing (i.e. # of times per day) gets screwed up on some, but they didn't even have most of her meds listed.  She got her 3 meds down in the ER.  

Eventually the attending came back in to talk.  Bear in mind this is now a new one because the shift changed a few hours before.  He asked me to basically describe our biggest concerns about what's going on with her, in my own words.  Not so much as a way of translating the story to him so he knows what's going on, but just so he could appreciate my concerns and understand better where I am coming from.  So, I recapped what I felt was going on with her.  Then I said that I don't know what is going on - she's not "sick" necessarily, but I'm concerned that what's going on is either some sort of illness, or it is some sort of progression (decline) of her general condition.  I expressed that the changes we've seen are since a) she stopped breathing for a minute on September 9th and was admitted to the hospital, and b) they changed her pain meds while she was in the hospital in September.  I said I don't feel like this is pain med related because she was on one dose per day for 10 days and then began twice a day.  I said it's only in the last 2 days where we added in the 3rd dose per day (that was the ultimate goal).  However, the issues we're seeing started BEFORE the 3rd dose was started.  And she went for nearly a month on the meds with no problems.  I said that I have no clue what is going on and that I don't think that anyone we've talked to so far has any idea either, nor do they know what to do about it.  His response was that I was 100% correct.

So, I was given the choice of admitting her or not.  If we did not, then for sure nothing would be done and we'd just go home and experience all the same issues with no resolution, only to probably call certain doctors who have no clue or to wind up back in the ER one day.  Or we could stay put, take the risk of picking up a hospital-borne infection (always a possibility), but hopefully get some answers after she gets some sort of a workup.

It's so frustrating not knowing what's going on or how to help her.  It's frustrating that it's not just a simple illness that can be treated with antibiotics.  It's frustrating that doctors keep pointing to the latest change, which was the addition of the new pain meds, even though I don't think this is related to that.  What about a change in her overall status since she stopped breathing that time??  I hate feeling like I'm wasting people's time with something that isn't "real".  It's not my fault they don't have a clue!  

Anyway we are at the hospital and I am not entirely sure what is going on yet!